Eating all the time!

I wanted to do a quick update in things going on in our wonderfully blessed life:

***We have not used Connor's gtube in over 2 weeks!! This is such a fabulous, life changing thing for Connor! Josh and I are adjusting to this little guy wanting to "eat!" all the time. Sometimes we are just in awe at the sight of watching him tear into his food and enjoy it...without a single gag! We are hoping he has turned the corner from all of the feeding aversions and pray he never goes back. He is also taking all of his medicines by mouth as well. 

Enjoying chips & salsa with a quesadilla

We have had many people ask us when his gtube will be removed.....well you see, Connor has a paranoid mommy and would rather keep it longer just in case. I want him to make it through an illness, make it through weaning off medications, and to continue gaining weight on his own. My thought process is that it isn't hurting him being there, so why worry about rushing to get it out. If we don't need it then GREAT but if he needs it then the gtube is still there. 

Sneaking a snack! Haha

***Well, the time has come....3 months before Connor turns 3 years old! (where has the time gone?!) This means we have our first of many meetings with the school district next week, December 16th as a matter of fact. He will start special needs preschool with the district the day after his 3rd birthday. So next week we are meeting with the district to inform them of Connor's needs and share all of his evaluations so they can start the process of placing him in the most suitable class for him. This momma is a little nervous about the thought of school! We have never left him with a stranger...ever! I know he will be fine and he needs to be around other children, but don't think I won't be sitting in the parking lot the first few days! Haha This will be a bigger adjustment for mommy than Connor! :) 

*** A little update on our adoption process. We have met with an attorney and will start our homestudy in January. We know it is no rush and God has the perfect timing and plan, so we are doing our part and getting things lined up just in case! 

No small steps....more like leaps & bounds!

Let me first start with the potty training updates!

After day 2 I was absolutely ready to throw in the towel and quit! Day 2 was the worst. He was having twice as much accidents and just wasn't getting the concept. I thought a lot about it that evening and considered quitting the next day but that meant I needed to buy more diapers. I sure didn't want to go back to diapers after going through those last 2 days of constantly cleaning up puddles just to do it all over again when we tried to potty train again. So we pushed through and day 3 seemed to turn out way better! Each day has gotten better and better, as a matter of fact he hasn't had a single accident in 2 days! I surely didn't foresee him doing this well just a week into training! It is a nice change not having to deal with diapers. I will say we have visited every store's restroom since we have decided to venture out of our house....that just comes with this territory though! :) 

He gets to choose between a sticker or "mm" if he is successful with the potty. This is what I decided to do with the stickers instead of letting him keep it all day. He was becoming to fixated on the sticker if I let him carry it around so he proudly places them on a coloring page on the bathroom wall. He sticks it on and then points at it to show how happy he is to put it on there! 

My other VERY exciting news is that we haven't used his gtube for 5 days now!!!!!!!!!!!!!!!! He is gobbling up almost everything in his path and still requesting for "more", "eat", "hungry"! It truly is amazing to hear those words come out of his mouth and for him to use them appropriately! The other morning he ate all of his yogurt and his banana so he decided he wanted to steal my breakfast! What?! Who is this and what did they do with my child?!! I am praying that he has turned the corner and we won't be looking back! It will hopefully be a very exciting Thanksgiving watching him eat with everyone else and actually enjoying the food! Whoooo hooo, I am so happy I could shout it from the rooftops! 

We are so thankful for all of God's blessings. 

Timers, puddles, and M&M's!

Potty training day 1-

I decided yesterday evening that we would try to take on the 3 day potty boot camp!  This involves us staying home for 3 days straight with a very structured, frequent potty schedule. Connor is no stranger to the potty. We always use the potty before bath time, he loves to sit on it, flush, and play with the toilet paper. I was headed to the store to purchase more diapers but I changed my mind....big boy undies came home with us instead! "Ickey mouse undiiiies!" 

* How is it possible that my little peanut is a big boy now?!

So this morning started out quite interesting! The first accident in the big boy undies must have scared Connor! He immediately started running which then spread peepee everywhere! Thanks goodness I picked all of our rugs up and have floors that clean easily. Oh boy...what have I gotten myself into?! The next accident, several minutes later involved the same thing but this time he ran in his puddle, slipped and busted his little hiney. At this point I was giggling and wondering why I decided to attempt this...why can't they just become potty trained, like just wake up one morning and voila!! 

I set my timer every 20 minutes all day long and every time that went off Connor started to say "POTTY!" and ran to the bathroom. That's progress!! So it is nap time and he has had 5 accidents and 4 successful potty trips.  I started with a sticker reward system but the stickers became too much of a distraction, so I moved to 1 M&M if he was successful. He thoroughly enjoyed his M&Ms! I guess that isn't too bad for the first half of the day! 

I am hoping and praying that this just gets easier, less peepee puddles all over the place, and it just clicks soon! :) 

Hoping....

Josh and I have been thinking long and hard for quite some time. We have been having the conversations about expanding our family! No, we aren't crazy...I promise! We are just ready to open our hearts and arms to another blessing from God. 

We are hoping to adopt! 

We have thought about another sibling ever since Connor was born and feared that the same thing would happen since we don't know why or how to prevent my early severe preeclampsia. Yes, we have strong faith but it is just such a nerve wracking thought! It is scary to think that could happen again at even earlier and all the other things that come along with having such early babies. My body obviously didn't do well with the fertility medications and it isn't a risk we are willing to take again. The risk of loosing a baby or possibly a momma and a wife is so very scary. Of course we want another child, we just won't be taking the same journey we did with Connor. 

We know we are blessed to have our sweet miracle and we thank God for him every single day! We are ready to share our love, for him to have a sibling, for him to have a life long friend, for them to learn life lessons together, for them to get into trouble together...we are ready!

So, we are starting the process of adoption! First things first, we will be meeting with an adoption lawyer next week to talk about the entire process and then getting our homestudy underway! We know this could be a long, emotional journey and we are okay with that. We continue to pray for Gods plan and we know that the right baby for our family will join us one day. We are very excited and nervous at the same time! 

 I will keep you all updated as this journey takes place! Please pray for God's plan and know that we have faith that everything happens for a reason.  

Halloween!

I know I am a little late, but I wanted to share Connor's first Halloween actually enjoying the trick or treating!

Of course Connor wanted to be "ickey mouse" , his absolute favorite right now. We went to a handful of houses, I figured he is only 2.5 years old so he doesn't need to visit every house. As we would be walking up the sidewalk we would remind him what to say and he typically said "ick or eaaaat" before we got to the door! It really was cute.

The even more exciting thing about this Halloween is that Connor wanted to eat.....everything! His favorite was the dumdum suckers. I think this may have been his first time discovering what candy was all about. Obviously we only allowed him to have it in moderation. 

A sweet moment I caught while we were headed to the first house. 

Busy little boy

Connor man has been surprising us lately! He has been repeating words and spontaneously saying words a lot! It is always so nice to him say a word or two and it actually be appropriate for the situation. He also seems to be understanding us more. For example "Connor, please bring me your cup."- he is actually bringing me his cup 90% of the time! Or if I ask him to go get his jacket, he runs to his room and tries to reach for his jacket hanging on the hook . He is definitely making improvements in the speech department and we are thrilled! This will ease some of the frustration he was having because he couldn't communicate what his needs were very well several months ago. 

He has been sick this week ( every week he is off his appetite stimulant, he gets sick... It never fails!) He had a long night Sunday night with a lot of coughing, congestion and throwing up. Thankfully he is over the worst and is sleeping through the night and just has a nasty cough left. He actually is feeling so well he is all over the place! He is a busy little boy, but goodness did he give me several heart attacks yesterday! Falling off our bed head first, tripping over a toy that he wasn't paying any attention to and hitting his face on the floor, flipping his tricycle several times WHILE moving! He is constantly doing something, thank goodness he is a tough little boy! :) I felt like he was determined to have an ER visit with all those crazy accidents yesterday! 

          * this little boy loves to help me clean!*

 

I love you

I said it today...I got a hair cut from a new lady so of course the 100 questions they ask to get to know their client come out:

 

"So what high school do you go to?"-pssssh I sometimes wish I were back to my high school days with no worries.

"So what do you do?"- explain that I am a grown up with all my grown up responsibilities. :) 

"So you work every weekend? That must be tough"- my response explained how early we had little man and that this schedule works out best for him and his therapies. Then the words came out, "he has autism". 

I was kinda shocked at how easily I said those words to a stranger that I was just getting to know. Several seconds after I said the words, I felt my heart flutter. I am not sure if the flutter was from me still adapting to speaking those words about my own child aloud or if it came from all my worries over the last several months. Either way, it was my reminder that "WE GOT THIS" and we will do the best we can just like we have done the last 2.5 years. 

          * My new autism puzzle piece awareness necklace *

I could focus on all the lining stuffed animals up over and over preventing him from going to sleep, repeatitvely walking or crawling a particular pattern while clicking his tongue, obsessing over all things Elmo, routinely stacking the same 3 colors of blocks in the same order, putting the animals inside and then outside the barn over and over, obsessively opening and closing the doors, etc but I choose to focus on the positives. For example, we heard those 3 beautiful words "I love you" for the first time before he went to bed the other night and he is consistently saying it every night! Those words trump all of the behaviors we see and deal with daily! I tear up every time I hear those words coming from his sweet voice. His language is starting to bloom and we are ecstatic about it! The other day he was sitting in the backseat babbling away to himself and then just started laughing! Laughter heals all, and listening to his adorable laugh makes my heart so happy. Another positive is that he is continuing to improve with his eating! He is steadily gaining weight while he still receives 2 gtube feeds/day. We are hoping to cut another gtube feed within the next few weeks, assuming he continues on this path. 

     *Lined all of his things up then pretended to nap*

   * Snacking on some yummy apples in North Carolina*

Connor's ABA therapy is twice a week right now for 3 hours at a time, we are hoping to increase to more hours soon. Feeding therapy is going well even though the little booger barely touches his food when we are there. Speech therapy is also improving, he consistently named every animal presented to him this week! He actually let his occupational therapist do hand over hand with the scissors to cut a piece of paper today! Most of the time he gets defensive when trying to do hand over hand, so that was a big deal. Connor continues to be very active during Early Intervention so I just recently changed his schedule to hopefully improve those therapy sessions.  Whew, I think that is all the therapy updates for now :) 

        *CHEESE....in Connor's world this must mean stick your tongue out!* 

Time for honesty...

It is time for my honesty, my full hearted- hold nothing back- honesty.

I write this blog to share our life with our loved ones and friends that have been there to support us from day one of this journey. I don't write to be judged. I know people are very quiet about things in their life, but that is not me. If you know me, you will know that when I share important things that is the way I heal. I never once kept our fertility treatments and struggles quiet,I never kept Connor's NICU experience quiet, I have never kept our life quiet. One reason I share so much is because I find there are many others out there going through the same situation and to be able to bond over similar struggles is such a great support. Another reason I share is because it is so healing to me. To keep all of my emotions and thoughts inside could cause disastrous things, and I feel much better just by sharing. I don't share our journey for pity or sorrow...I share so that I am able to help educate someone. Someone who may not know about fertility issues, premature babies, feeding tubes, life with a special child, sensory processing disorder, etc..The more awareness then the more accepting people are of these things. So as I share the results of the evaluation, I don't want judgement- full on support and awareness are my goals.

Monday was an anxious day for me...not because I didn't already know the results, but waiting to hear those words that my heart has already been telling me for so long. Our little guy did everything in the evaluation just like he would do if he was in our home environment, so I know they got an accurate view of him. The 3 evaluators were busy writing on their clipboards the entire time...every little move, every little interaction, every word that came from his mouth. I will say that actually hearing the words "Your son has autism" is quite the largest kick in the stomach, your heart sinks, and you feel 1,000 different emotions all at once. There are tears, which I would expect to be completely normal for any family after their child just recieved a diagnosis. The tears come from worrying about his future and thinking back to when we planned and talked about children...we never imagined any of what our life is like in that vision. I don't know too many people that do imagine those things or even think what if. But, this little guy has never once gone by that  book " what to expect when you are expecting" so I should not have expected anything different once he joined us in this world 12 weeks early. He has an entire separate series of books that he seems to be going by, I just wish he would share them with me! Life can never prepare you for this, we just learn as we go and pray that God leads us in the right direction. 

Anyways, the autism diagnosis does not change my child. He is still the same little boy that we prayed so hard for and have always loved so much. He will continue his therapies, we will continue to fight like crazy to provide him with the best, and we watch him grow into an amazing, inspiring boy. I KNOW God has a plan for this little guy. Even though we aren't aware of that plan,we know that God blessed Josh and I to be his parents and we are just along for the ride. This special little boy has opened our eyes, changed our perspective on life ,opened our hearts, and taught us to embrace the little things.

Thanks to you all for your continued support, we are beyond blessed to have such great people in our lives.

With Love,

Laura 

CARE evaluation

Back when Connor had his STAT test done in July, the developmental doctor that did the evaluation scheduled him for the final evaluation in January. But, back in March his EI put him on the CARE evaluation list as well. Typically it takes a year or longer to get an evaluation for autism, which is why we put his name on the list. I didn't want to wait until he was already three if he needed it done but I was more than willing to cancel it if he didn't need it by the time it rolled around. So, last week while Connor was sick I recieved a phone called from SC department of disabilities and special needs. They were ready to do his final CARE team evaluation! So he has it scheduled for October 7th at 9:30. It will take 4 hours long for them to evaluate him, and several different people with be a part of the evaluation. 

Of course I am a ball of nerves....I had mentally prepared myself for this in January, not next week! But I also know that the earlier the intervention the better, so we are doing what is best for little man now. So please bare with me the next few weeks if I seem a little more sensitive then normal. :) My mind constantly worries and the thought of a diagnosis that stays with him for life is a lot to worry about.  Regardless, if he gets a diagnosis he is still my same adventurous, happy little boy. I will NOT let autism define my child. You do wonder if he will get judged or made fun of, will he ever drive, will he have a date to prom, will he go to college, will he be able to live on his own, will he get married....those are all the thoughts that run through my head when I think about his future. That is why I fight like heck now to provide him with the best so that he is capable of living the life he wants to when he gets older. 

My heart knows that his ways of doing things aren't necessarily normal but they aren't wrong- they are part of what makes him so special. For example, as I write this he is running around our backyard. As he is running the same path over and over on his tippy toes,he is making a clicking noise with his mouth. But as he is doing this he is observing every little thing around him, that little speck of grass, that crunchy leaf, that bird chirping, the light breeze in the air. He teaches me something so valuable, he teaches me to slow down and enjoy the simple things in life. 

While we gear up for this evaluation, his ABA is getting started this week! We met his therapist today and she does great with Connor. For now we are starting out with 8 hours/ week with her and he will still get his 4hrs/week of his other therapies. He qualifies for up to 20 hrs/week of ABA but that is quite tough to work out with his therapy schedules, nap time, and the amount of time we spend trying to get him to eat by mouth. I am just so thankful to be able to get him into ABA before he turns 3 so he doesn't have such a long wait! 

Keep our little man and our family in your prayers please, strength is what we are going to need as we go through this process. 

These photos are from his super hero photo shoot by Jen+Holly photography.. I think they absolutely capture my true super hero! :) 

Food, ABA, & big boy bed updates!

It has been a little while since I have updated on how things are going in our little world! Lots of changes :)

First of all... Food, food, and more food!! We still aren't sure what clicked after our few hour visit to Marcus feeding institute but it doesn't matter because our little man is eating! We did pretty much puree foods for a couple weeks and slowly transitioned to more solid foods. Right now, C is eating a mixture of foods and it is absolutely amazing!! Some examples of what he has eaten: slices of pizza, dill pickle spear, lemons, bananas, goldfish crackers, yogurt, chicken, quesadilla, beans, chips, broccoli and cheese soup, grilled cheese sandwich, sliced cheese!! I know some of it is junk, but right now we aren't making a huge deal because he needs to master the eating skills! The list could go on and on, he is eating! Yippee, soooo exciting!  While you read the list I am sure you noticed those things contain milk, yes milk! We are 99% sure he has outgrown the milk protein allergy he had! His skin doesn't break out where it touches, no more eczema from milk products, and no major vomiting or other GI issues! 

                                  {Getting practice, but still make a BIG mess}

We, Josh and I, made the ultimate decision to cut back his gtube feeds even more than previously to encourage more intake by mouth. Of course  all of his doctors are aware and we are now making weekly weight checks since the cut back. He still gets 2 gtube feeds per day, at 6 am and 10pm so he is asleep during those feeds. Now he has all day to work on his eating skills without feeling full from his gtube feeds. So the first week of this cut back he lost 4 ounces, the following week he has maintained his weight. Hopefully he will continue to maintain and eventually gain weight with this schedule!  

                         {Spaghetti face}

                                                   {Yummy lemon}

On to the ABA therapy updates: Back when C had the STAT test, we were told he qualifies up to 20 hours of ABA therapy per week in addition to his current therapies. Since then, we have been trying to find an ABA therapist. This is a struggle and is starting to make me very nervous. Since babynet doesn't pay the therapist the greatest, we are struggling finding one.  The reason this makes me nervous is because C looses babynet when he turns 3, therefore if ABA therapy hasn't been initiated by then he is placed on a VERY long list. He is number 1,048 on the PDD waiver, which means there are 1,047 other children in South Carolina ahead of him waiting for ABA therapy....this could be years before he could get the therapy he needs. If it gets started before 3, then my understanding is that the therapy will continue on even when he turns 3.. no breaks in therapy. See why I am nervous?! In the meantime, we continue his weekly therapies and are always learning new things to help our little man. 

He may not have an official diagnosis of Autism yet, but I am constantly researching and reading. I wanted to share this and bring more awareness to autism: 

Growing up.....C has sorta been moved to a big boy bed! We were very fortunate to make it this long in his crib. The other day when I saw him perched up on the edge of the crib, I panicked! Thank goodness he didn't have his CPAP hooked up to him yet, but that was my fear..I feared he would fall or jump from the crib and his cpap tubing get caught. Therefore we removed the front part of his crib and put a mesh rail. He has slept several nights and naps in his "new" bed and hasn't attempted to get out....yet! I am not sure what we are going to do when he gets out with his cpap hooked to him since he isn't capable of removing the mask. We will just have to cross that bridge when it happens! :) This bed change has been a big reminder to me that our little baby is no longer a baby!! People don't lie when they say that children grow up in a blink of an eye! 

That not so fun trip to Santa's Land

While we were headed to Tennessee on our vacation, we had planned to stop in Cherokee, North Carolina at a little family theme park called Santa's Land. I believe Josh was more excited than any of us to check this place out since he had gone there growing up. 

As soon as we walked through the gates C was trying to run the opposite way we were going. If you didn't know this already, public places are extremely hard to keep him with us if he isn't in a stroller or buggy. We have to physically hold his hands, sometimes he is willing, and he manages to wiggle out of our tight grasps. If we aren't holding his hand then he takes off running, no matter how dangerous the area is- This has given me multiple heart attacks in parking lots where he starts running towards moving cars! 

As soon as he sees the fun little train that travels around the park, he screams. When I say scream, it is like a scream and a growl combined, not a pleasant sound by any means. Of course we had onlookers immediately as he screamed. We were able to distract him enough to go feed some of the animals. He was most interested in the deer, after that it was hard to get his attention on the other animals. 

As soon as we made it to where all the rides were, he growled and screamed again. I guess the sounds, lights, smells, and movement was just too much for him. I was determined to get him on a carousel though! He had never been on one so we decided we would all sit on the bench. The bench doesn't move like the horses do, so I figured that would probably be a better place for the first time. We placed C in between us but that didn't last long! As soon as the carousel started to move, he flipped out. I placed him in my lap and tried to distract him by counting all of the horses in the ride, all the while he was screaming and crying. Thank goodness we were the only ones on the ride, but we gained many stares from around us. As soon as the ride stopped, Connor said "bye bye" in a pitiful whimper and we quickly got off. 

As we walked around and saw all of the other children having an amazing time, smiling from ear to ear, my heart started to break. Every parent wants their child to enjoy typical things but yet those typical things may not interest him or scare my child to death. It is tough because we never really know what he will absolutely love or hate, but I knew one thing...he was not a fan of this theme park! We found a basic slide and ladder and let him play on that for a good while before we left. 

I am glad we got to try a smaller park out first with less people, but the stares that some people gave us was ridiculous! With children that have sensory processing disorder or autism spectrum disorder, they have meltdowns. Meltdowns aren't because their child needs more discipline, discipline isn't going to cure the meltdowns or unique fears. I just wish I could tell those people that stare just a little too hard that it isn't polite to stare, and I am sure they were taught that at some point in their life! 

Needless to say, we won't be going back to any theme parks anytime soon but it was good for us to learn more of what is difficult for C to handle. We continue to expose him to things and places because you just never know what he will absolutely love! He did love the aquarium that we went to in Gatlinburg, TN.  That made Mommy feel better watching him run up to the tanks and say "fish!"  while he did the sign for fish with his hands. It is the most heartwarming feeling ever to watch your child have a good time and not show any fears :) 

Vacation in the mountains

I write this while sitting on the back porch of our cabin, nestled back in the woods of Tennessee. The peaceful sound of birds chirping while I rock in the rocking chair is just what we have needed lately! 

Connor is taking a nap now, which has been hard to accomplish the last few days! You just don't realize how much vacation can mess up a 2 year olds sleep schedule. 

We were planning on our cabin having a swing, unfortunately it doesn't. Not sure if you remember, but we swing daily with C and it seems to make a world of difference in his behaviors and focus. After 2 days of a little boy constantly running around, meltdown city, major obsessions with doors,and terrible behaviors... we got desperate! We found a porch swing at one of the restaurants and swung for quite some time. We even searched for a park to find some toddler swings- that was a first! We can say that we have never looked for a park while on vacation! Thankfully we found a nice playground!! C was able to get some swinging in and use a lot of energy climbing and sliding. *Connor and Daddy on the slide*

*Swinging at the park*

Just because we go on vacation doesn't mean his daily requirements stop. We continue to do and blend his gtube feeds, work on eating by mouth, put his CPAP on for sleep and struggle to find alternative ways for him to get his sensory input in. We are over the moon to finally have a vacation though :) The breaks from our work demands, weekly doctors appointments and daily therapies is very nice and well overdue! 

Now time to sit back, rock, relax and enjoy all of God's beauty... At least until Connor wakes up! :) 

*Swinging at Apple barn grill*

What this little guy has taught me

Spending over 3 hours in the car today going to and from an appointment for C, I had time to reflect on our life. Boy have I learned alot since the birth of Connor! I decided I would share my thoughts on what our little guy has taught me since he joined us here on earth.....

* First and foremost, ANYTHING is possible. 

    Our little 1lb 8oz, 13 inch boy is a walking miracle...if you ever had a doubt in miracles, just take a quick look at him! 

*He has taught me not to take basic life skills for granted.

    I never, in my wildest dreams, would have imagined this life for our child. I love to eat...how could something we love so much be so difficult?! Even though he is starting to make headway with eating, I will never forget where he came from. The first time I was able to bottle feed him in the NICU was terrifying & exciting at the same time, the first time he ever opened his mouth willingly for a spoon was amazing, the  first time he asked for "more" food had me in tears, the first time in over 2 years  he finally ate more than ounce of food! People do these skills multiple times daily and never think twice about it, but each one of those are HUGE milestones and we celebrate each and every one of them! 

* He has taught me that it is okay to cry.

    I am pretty sure I have cried more in the past 2.5 years than I have in my entire life...and that is okay! The tears aren't always of fear, some are of joyous moments, some are from exhaustion, some are from stress, and some tears are just because! It may look like I handle some of his life struggles easily to everyone, but that doesn't mean I don't ever cry. As a matter of fact, I can seem to keep it together but one odd, simple thing can trigger a huge, snotty, red faced meltdown! It is okay for me to get those tears out because once that session is over, I feel like I could take on the world and am ready to shoot for the stars to help my little man even more!

* He has taught me that I am capable of doing things that I never thought I could.

     For instances, my husband and I work opposite schedules (for 2 years and counting) so we can be home to care for him. Plus, no daycare around us would take a child with a feeding tube and CPAP, even if they did the nurse in me probably would have a lot of issues. It hasn't been easy having a child with special needs and both of us feeling like a single parent all the while. But...we continue to do it because it is the best situation for him at this point, not to mention we still have to pay our bills! 

* He has taught me not to be so quick to criticize. 

      Just because that child is having a  major meltdown in the store doesn't mean they aren't getting what they want....maybe the child saw a motorized cart and it terrifies him, maybe the voice on the overhead speaker was just a little too loud, maybe he doesn't do well in loud crowded areas, maybe that relaxing sound of rain on the roof is very upsetting to him. All of those things may be why you see C having a meltdown. Before him, I never would have stopped to consider simple things like that!  Now anytime I see an upset child, I never even think that the parent should do better parenting- my heart  just feels for them. 

* He has made me a better peds nurse.

     I think having a child changes the way you look at nursing, especially in pediatrics. I also think having a child with many health issues and developmental struggles makes me more compassionate with my patients and families than I ever was before. I know what it is like to "sleep" ( aka: rest your eyes for a VERY short period) on that couch, I know what it is like to be sleep deprived from stress and worry about all the what ifs that you can't control, I know what it feels like to not know if your baby is going to live, I know what it is like to watch your baby quit breathing and watch them intubate him right before my eyes, I know what it feels like when they tell you how far behind your child is developmentally, I know what it is like to worry about what type of life your child will grow up to have. This entire journey with Connor has changed the way I do nursing FOREVER and I thank him for making me a better nurse!

     

I could probably keep writing about all the things Connor has taught me about life, but I would be here all night! I know that my entire outlook on life has changed since March 25, 2011 thanks to an amazing blessing from God. :) 

A week later....

So here we are, a week later after the Marcus evaluation....and our little man is doing very well with puréed foods!!! :)

{Actually ate some beans at the Mexican restaurant! The first time he has eaten a decent amount of food in a busy restaurant like that!}

Each day he is taking more and more by mouth, today he took about an average of 4 ounces per meal! I am not sure of the  number of bites because I just a quit counting....why count when he is so willing to eat them?! As soon as he swallows I am offering another bite! This is HUGE! I am hoping and praying that he continues down this path. Josh and I both agree we are willing to purée up whatever he wants as long as he eats it. Eventually we will work on more textures but now I say lets master getting enough daily intake and then textures. Now don't get me wrong, we still offer things that need to be crunched and chewed but it is randomly throughout the day or near the end of a meal. I still want him to get practice chewing, I don't want to loose the skills that he has already learned.

So, we are weighing the foods before and after so we can get an accurate count of the total he is eating. I then subtract that from his total amount of gtube feeds and give him the remaining amount of his blenderized food in his tube. We also are counting calories to make sure he at least maintains his weight. So there is alot of calculating that goes into his meals each day. 

Here are just a few things he has been eating: chickpeas, beans, potatoes, green beans, coconut yogurt, mixed fruit, beef, chicken- all puréed. He has been eating about 1/2 banana, taking his own bites from the actual banana the past couple days- just amazing! He is also is drinking juice! That is another big step considering anything but water would make him gag and vomit. Thanks to a littleElmo   on a juice box, he is drinking about 3 4 oz "Elmo juice" per day. Hey, it is extra calories....every little bit counts! 

{Drinking juice}

We couldn't be more excited and proud of our big man! I will continue to update, hopefully things will continue to progress! We go to see his nutrition and special needs doctor in Spartanburg next week, my plans are to tell them I am ready to wean his gtube feeds now! I feel if he is this interested, then why not wean his feeds and allow him to feel hunger instead of always being full...it has got to help with his oral intake! 

What a SHOCKER!!

Well yesterday we had our 3.5 hour ride to Atlanta for Connor's evaluation before the clinical trial. I had never even considered what we were told........

Marcus Autism Institute is a beautiful facility! It was very welcoming to adults and children. The family room and playroom was a nice commodity to have while you wait, also amazing for the people that are there 6-8 weeks with their children. We met some families that had been there from 3 to 8 weeks, their children were starting to make great progress! It was such a comforting thing to know all of these people we interacted with knew exactly what life was like with feeding struggles. 

We first went over all of the details of the clinical trial, signed multiple consents and then filled out a huge packet of papers about Connor's eating habits. The next part was to watch me feed Connor. They had us in a room with a mirror window while they sat on the other side and video recorded us. I had an earbud in my ear while they told me what to do next. Connor was presented with puréed green beans, pears, potatoes, and garbanzo beans.....did I mention they were ALL puréed?! I was only allowed to offer a certain amount of food on the spoon in 30 second intervals. Every 30 seconds they told me in my ear to try the next food, we did this 16 times. I wasn't expecting this to go well, he hadn't had a nap all day and it was in the middle of his normal nap AND he has just finished his gtube feed about 1.5 hours before! And wouldn't you know Connor opened his mouth for each bite and had swallowed it before the 30 seconds were up...he even signed "more" during this rotation of food!! Josh and I were astonished!! We have struggled with feeding issues basically since he was 6 months old and he ate EVERY SINGLE BITE!!

After the completion of the feeding observation we met with 2 of the doctors. The first doctor tells us that C didn't display any refusal behaviors so therefore he doesn't qualify for the clinical trial! What?!! They don't want to give him medicine for a behavior problem when he doesn't have that problem, which I agree with the medicine part. We all know that if this were a year ago, he would have qualified because of his behaviors. Thanks to our great feeding therapist and food play so often, he now rarely displays negative behaviors with food and is willing to taste almost anything. His problem now is chewing and swallowing...which apparently is not what this clinical trial is focusing on. 

We then met with another doctor, the head doctor of the feeding program at Marcus. He told us that C did so well with puréed foods that he believes if he were to come back for 1-2 weeks for intense therapy that he could hopefully be weaned off of his gtube feeds! We discussed the insurance issue but it turns out his secondary insurance is accepted there! It will take atleast 2 months to get approval but hopefully all will work out. In the meantime, the doctor told me he was going to email me their protocol for what to do so we can work on it at home. I am anxiously awaiting this email so I can see how they handle these challenges and what they recommend. 

Since we have been home, we have gone back to puréed foods. He never was very fond or successful with pureed foods in the past, hence why we moved in to more solid foods and have never tried purees again. Last night he was very successful, he did end up vomiting but did continue to eat afterwards. So far today he actually ate about 45 bites from the spoon at lunch! He demolished his potatoes at lunch! I am thinking all of the textured foods, chewing and swallowing all go hand in hand with his sensory issues...which I am praying he will overcome one day and eat everything! In the meantime we are going to offer him puréed foods and just see how things go.

I hate that he didn't qualify for the trial, but we learned some new things while we were there! I will update on how he is eating, I am praying that he continues to be so willing to accept food! 

Random phone call

Last week I received a random call from one of the GI doctors at C's GI office. The phone call was about an opportunity for him to go to Marcus Autism Center in Atlanta, GA for a week of free intense feeding therapy at the feeding clinic! Sounds too good to be true, huh?! 

Not sure if you remember but over a year ago I filled out the 30 page application to Marcus feeding clinic only to battle insurance about getting coverage there. I never was able to get approval after several appeals. Basically we decided we would continue doing therapy with our favorite feeding therapist at the hospital weekly and just see how things go. Connor's progress has definitely been a roller coaster, one week he is very interested in food and tasting and then the next he may refuse everything that he has previously shown interest in. We continue to do food play, no pressure involved 3 times a day. We make sure to include him at the table even if he isn't interested. I will say he has made progress but it is at a super slow pace. Right now his biggest struggle is swallowing the food, he will put food in his mouth and do a few chews and then packs it away. He will keep the food there forever unless he throws up, occasionally he swallows it. 

I do find it quite interesting that we received this phone call not long after we were told he is showing characteristics of autism....how fitting, this is at an Autism Center...maybe this is meant to be?! I called Marcus to get all the details and to find out when we need to be there. So, it is a clinical trial involving intense therapy from 8:30-4:30 Monday- Friday. In the morning before therapy starts, C will get a placebo or a medication that is being studied to reduce anxiety and allow the brain to accept new therapy while reducing past associations with food. Regardless, placebo or not, C will get all day intense therapy! Josh and I feel we would be dumb to pass this opportunity up..we will never know how Connor will do unless we try. We have decided not to question this decision and trust that this is Gods way of giving us a sign to give this feeding therapy a try. :) 

Here is the kicker, we have to be there next week for the first evaluation ( just one day) and then the following week we need to be in Atlanta ready to start! Very short notice and of course it has put some strain on me to get my shifts covered at the hospital, but thankfully I was able to. Thanks to all my amazing coworkers that helped me out!  I stress about the work situation  and know that I need to work but I have to do what is best for my little guy and this is an amazing opportunity that we can't pass up! Thankfully it is no big deal for Josh to get off work...whew!

So now I sell the heck out of Button Lovies so that it can help us handle lodging in Atlanta for a week, every little bit helps! We all know that a week stay in Atlanta won't be cheap! But, no stress or worries...we will make it happen! :) 

I will try my best to update daily while we are in Atlanta to share how things are going! I am beyond excited about this opportunity for our little man! I pray this week of intense therapy is just what he needs to push him to eating successfully everyday. 

C with his goldfish Button Lovie...how cute is that?!

C and his best friend, George! George goes with us everywhere now!

Trying to figure out how to work this new tricycle!

Mommy and C :)

ABA therapy

I write this while my sweet angel sleeps....

Yesterday Connor had the STAT test done to evaluate for autism with developmental pediatrics. The first step was the m-chat which  was done around his 2nd birthday that showed him at high risk for autism. The STAT ( screening tool for autism in toddlers) was the second step process evaluation. 

Josh and I may not always see eye to eye about what makes our little man quirky, but we do both have the same goal for him: to do everything we can possibly do for him now to provide him with the best life. 

The psychologist evaluated through play with Connor while we answered a million and one questions about his health and behaviors for about 2 hours. The psychologist was testing his social relationships, imaginative play, imitation, communication, and developmental skills. I am sure she tested for more things that I can't remember, that is quite a stressful time for any parent to remember so much information. 

Both evaluators met together to discuss Connor and the results from the STAT for about 20 minutes. I am sure those were the longest 20 minutes of my life! When we sat down to get the results we were told Connor failed the STAT. In other words, he has been identified as possibly having autism.  Of course in my heart, I already knew the results....most mom's have that special power, but there is always that little part of you that hopes otherwise. With that being said, he now qualifies for 20-25 hours / week of ABA therapy (applied behavior analysis) in addition to the therapies he already receives   everyday. I know adding those therapies will make it tough for Connor and our family, but we are willing to do anything to help out little man out. The ABA therapy is obviously an intense therapy that is used with autistic children. It will get started as soon as possible. In January he will do the final step evaluation called the ADOS (autism diagnostic observation schedule). Depending upon those results will determine if he gets the actual diagnosis or not. 

As a mom, I do carry guilt. I wonder if there is something I did, or something I didn't do, or what I could have done differently that would have made his life not so difficult. When I start thinking that I try to push the thoughts away and remind myself that God has a plan. He is the only one who knows the plan and we are along for the ride....what happens is meant to happen so there is no need to worry and stress over it. Some days are easier than others for me..but regardless, diagnosis or not - Connor is still our same beautiful, amazing, strong, happy, smart, stubborn little miracle and nothing will EVER change that! 

I know God put Connor in our lives because he knew Josh and I could handle him and would shower him with unconditional love. He knew that we had amazing family and friends that are always there for support to help us through the tough times and share the happy times with. With that, I want to thank all of y'all for being amazing support to us from the very beginning! :) We love you all and couldn't not thank you enough. 

Therapy with his Early Interventionist, we just love Beth!

Hanging out at Frankie's Fun Park

First trip to Saluda Shoals splash pad....not a huge fan but took some time & he started to warm up to the water.

First time at Monkey Joes, a little overwhelming for C but he enjoyed climbing!